Many teens with autism spectrum disorders are capable of managing ordinary activities like daily hygiene and homework—yet their social and executive functioning skills are not up to the level of their peers. What that means is that they are neither in need of ongoing intensive support, nor are they ready to simply step out into the “real” world on their own.
This borderline situation can be nerve-wracking for everyone involved. Your teen may be unable to simply go off to college, train for or apply for an ordinary job, or live independently. Yet at the same time, it may be unnecessary to plan for a highly supported situation such as intensive job coaching or a group home.
The bad news is that your child needs more support than the average young adult But there is good news—in two forms.
First, the law states that your child may stay in high school up until his 22nd birthday—and, further, that transition programming must be written into her IEP. That means that a wide range of program possibilities may be built into your child’s high school experience, both during the school year and during the summer.
Second, more and more organizations are recognizing the “not ready for primetime” teen as a potentially important demographic. As a result, more programs are springing up across the country to provide summertime life-skill and college/life prep training for high schoolers. These programs are structured in different ways, and cater to slightly different groups. The one thing they all seem to have in common, however, is that they come with a significant price tag.
Specialized Summer Programs—What They Are, What They’re Not
A good high school program with a transition plan in place is likely to be very helpful to your child with autism. Along the way, your child should be able to build such skills as time management, money management, social interaction skills and attention to hygiene. Depending upon your child’s abilities and challenges, he or she may have limited experience working in the community, taking public transportation, grocery shopping, cooking and cleaning.
If your child with autism is, however, planning to take the next steps forward toward college, independent living, and/or employment, he or she may need more in the way of preparation. That’s where a specialized summer program comes in. Many of these programs are offered by special needs high schools as a service for their students and others with similar needs. There are also an increasing number of programs offered during the summer for young people who may later enroll in more robust year-long or even multi-year programs.
Specialized summer programs for high schoolers are not synonymous with summer camp, though there are almost always recreational elements included in the programs. Unlike camp, the purpose of summer programming is to build academic, executive and social skills while also working on life skills ranging from self-care to banking. In some cases, summer programs also include goal-setting and work on issues like self-esteem. In general:
- A summer life/college prep program is usually intended for young people with high-functioning autism or Asperger syndrome, and is often open to kids with related challenges such ADHD, Non-Verbal Learning Disorder, Learning Disabilities, and so forth. It is rare that such programs will be open to young people with severe cognitive impairments or mental illness—in part because more severe challenges are often more appropriately managed in different types of settings.
- Summer programs are usually residential, and may be held at a college campus, boarding school or similar location. The reasons for this are easy to understand: It’s only outside the home setting that young people can be challenged to interact with a roommate, manage money and transportation issues without a full fridge or chauffeuring available, or cope with anxiety without the immediate availability of a parent.
- Summer programs may be available for a few weeks or a full summer. Some programs offer customized options: one week, two weeks, full summer or “gap” summer (between high school and college).
- Specialized summer programs may be funded, in part, through your school district (if your child is still in high school), through insurance (if therapy is a part of the program) or through SSI. Bottom line, however, is that parents considering such programs may well have to dig deep to come up with at least a few thousand dollars in tuition, room and board costs.
Who Should Attend a Summer Life/College Prep Program?
While summer life/college prep programs are loaded with just the type of activities and goals your child “should” have, not every high schooler is up for spending a large portion of the summer building skills. For some young people, more traditional options—camp, volunteer activities, internships, summer jobs or just plain relaxation—are more important than structured therapeutic programs. Given that there are a growing number of recreational options available to kids with special needs, it’s important to be sure that a summer life/prep program is right for your child and your family. Before leaping into a program, therefore, it’s important to consider these questions:
- Do I (or does my child) have specific objectives or goals for the summer? Is there a way to measure whether he is successful in meeting those goals (or whether former participants were able to meet similar goals)?
- Do we (parents, teachers, teen) have a plan for building on new-found skills once the summer is over?
- Is my child developmentally ready for an away-from-home learning experience, or do I just hope he is?
- Is my child truly motivated to get all she can from a residential summer program? Or is she either “along for the ride” or actually opposed to the idea?
- Are there other, equally effective, more community-based options available for my child at less cost?
- Am I, as a parent, willing and able to facilitate my child’s newfound skills and independence once he returns home? Or will we both slip back into old habits? If the latter, then even the best program may have little long-term impact.
Assuming that you have decided to give a summer program a whirl, is your child a good candidate for the available offerings? Programs do vary, but they tend to have a number of similarities, including high instructor to student ratios, focus on social thinking, opportunities to take part in community activities, and opportunities to take on challenging situations and relationships in a supported environment.
All this is to say that life and college prep programs, whether offered during or after high school, are most appropriate for young people with autism and related disorders who are motivated and capable of handling the challenges offered. It’s unlikely that such a program will be appropriate for a young person with severe cognitive or behavioral challenges. It’s also unlikely that such a program will serve to motivate a young adult with ASD who really doesn’t want to take responsibility for his or her own life.
Bottom line: If your high schooler with autism is motivated to take part in a program that will help him to build his independence, and you feel he is ready for a challenge, one of the many available programs may be right for you. If, however, your child is resistant, or not quite ready for an away-from home experience, there are plenty of other summer options.
How to Find a Life/College Prep Summer Program for Your Child with Autism
There are several large, multi-site programs that offer summer opportunities for teens on the spectrum. But while these are well-advertised, they are by no means the only options out there, and they are often prohibitively expensive. Before selecting one of the best-known programs, consider taking these steps:
- Talk with your child’s high school guidance counselor. Chances are, your child is not the only one looking into summer options, and guidance counselors often know quite a bit about what’s available.
- Talk with your local special needs parenting group, autism support group or autism center. Like guidance counselors, members of these groups tend to keep their ear to the ground. Not only are they likely to have suggestions, but they’re also better equipped to provide inside information on the style and quality of available options.
- Call special needs schools that cater to youngsters like yours. If your child is diagnosed with high-functioning autism or Asperger syndrome—or if she has language based or learning disabilities—there are residential and day schools designed specifically for her needs. Very often, those schools offer summer programs, sometimes on site and sometimes on other area campuses.
- Check out reputable websites, such as The George Washington University HEATH Resource Center. But keep in mind that many online listings are simply directories and that these programs have not been scrutinized for quality of services. You’ll also find directories of private schools in your region which may include summer offerings.
Once you’ve zeroed in on a few options, learn as much as you possibly can about the program, the students they serve, the staff, the location, the goals and the outcomes. (Think long and hard about any program that is more than a few years old and cannot discuss outcomes reliably.) If you can, visit the program yourself, interview past participants, and talk with parents. Even if the program is generally a good one, it may or may not be the right match for your individual child.
The Cost of Independence
If you happen to have an extra $2,500 to $10,000 in your pocket, you’re all set to pay for your child’s summer experience. If, on the other hand, you don’t have that kind of money set aside for a transition program, you may be stuck. There are only a few options for finding the money you need. These include:
- Asking the program providers for suggestions. They may have scholarships available, or know of funding sources you’ve never heard of.
- Talking with your school district. If your child is going through the transition process in high school, it may make sense to write a short-term summer program into his IEP. When that happens, the program is paid for by the district.
- Applying Social Security funds to the program. If your child receives Social Security money because he is an adult with a disability, that money may in some cases be used for a “transition to real life” program.
- Exploring scholarship/campership options. Depending upon where you live, you many have access to community or foundation grants through organizations such as your local chapter of the Autism Society, or even through philanthropic groups.
Originally posted on Autismafter16.
